Tag Archives: first days

As you might suspect, traveling after stroke is not easy. Actually it’s pretty tough.

Day one

Airports are overwhelming like supermarket before Christmas. Even healthy people can get confused, for stroke survivor it’s just too much.

So many little things happened. For example i bought newest Harry Potter in German, not English. You know, ich spreche Deutch ein wenig, I speak German a bit, but by the way I would gladly sell it. Anyone? Gelegenheit! Great deal! Okazja! Promoción!.

Or I was standing for few minutes in front of the sign saying „ausgang/exit” and I still had no idea how to get out from airport… Luckily my driver (yes!) was a patient person and took me to the hotel. Where i had room reserved, for a bad surname;p but it’s ok, I’m a hero and I sorted everything out and I could take show, see welcoming me Haribo gummy bears, get dressed, buy coke zero, drink a coffee and go to dinner to meet everyone:)

I was regretting I had been after long trip and not in the best shape because of that. Really. And I hope that i didn’t behave like a complete churl or bighead, I’m afraid that i might have.

The funniest point of the meeting was this general welcoming. Chit-chatand

The dinner was very nice. I met few members-ambassadors a bit better and I have to admit that we all seemed tired.

We spoke about life, strokes, our experiences, prostitution in Germany. It was e

Extremely nice, but I must admit that I felt relieved when we could excuse ourselves and jump into the bed, without even cleaning face.

I promise to give you insight into stroke-realted things we discussed, but I simply don’t want them to dissapear in the other things. Each issue-one article. Deal? 😉 But now I just have to announce my new goals. a) visit water bar in Munich (they have different kinds of water;p It might be alternative for my „un cervesa, por favor”) b) visit Weihnmachtsmart on a frozen lake in Hamburg. It will be perfect place to drink my Gluhwein (hot wine). If I break all the bones and die, at least I die laughing;P

During the night I found out my king-size bed is actually two smaller-size beds. I found it quite suddenly, while being partly on the ground. But! on the bright side I didn’t kicked bedsheet of my bed, mom would be proud.

Company Merz, which is one of the fundaments of the project, is the producer of botulinum toxim of the new generation. That’s a first thing. It’s also intrested in CSR I guess, and it came intxo cooperation with SAFE (Stroke Alliance for Europe). They decided, as we say in Polish, to join pleasurable and useful 😀 and take care of spasticity in a more complex way.

I mean. Merz representatives looked quite confident while talking about their research (very interesting) and their belief that this project actually can help in a problem of spasticity. They convinced me that it’s not (only) about selling their product (which would be sold anyway;p) but doing a good thing from which more than 9 members of panel can benefit.

For me the most interesting thing were results of their research on spasticity. These were shocking and easy to believe at the same time to tell the truth. It was like confirmation of my intuitive believes on spasticity. In a great shortcut I’m presenting the most interesting for me information. I will write more on these in separate notes as each and every of them deserves to get my full attention. Well then:

many of people suffering from spasticity don’t even know the term „spasticity”. How they can search for relieve then?;)

Botulinum therapy can be satisfying for some reasons and disappointing for others.

Many patients never heard about spasticity from their doctors.

Main barriers in the access to botilinum therapy are bureaucracy and not enough amount of injection devices.

And you know, despite having a feeling that I’m from the third world of stroke treatment, I see that we all have same problems all over Europe. Every country is lacking the individual approach in therapy and towards a patient. Like everywhere people after strokes could be pampered more;)

I’ve felt a bit weird when one of the company representatives asked me why I haven’t tried therapy with botulinum. I answered, but if it had sense, I still have no clue:D… I don’t really know. The truth is that I don’t know too much about botilinum therapy.

If you are afraid that the project will be like advert of the pharmaceutical company, don’t be anymore. Actually I felt the same way until I realized that both campaign/website and botulinum therapy are well indefied as the means to a happy end. In the end we will get a nice and well adjusted source of knowledge about spasticity, useful for many people (including strokies of course) and helpful. And it will be translated to few languages, including my lovely Polish;) And if Merz doesn’t do that i will make them remember, that i have only one fist and leg spastic, other can fight for our right;P

It seems that knowledge about spasticity has to be distributed in many ways as even doctors are not well informed about it. Even they could use some more knowledge. I’m very happy to be a part of the project and not only because I had amazing food there:P

I’m extremely tired. 2 days of an intensive trip&working on project, then 2,5 od writing, translating, but… I’m the best faker (I fake my physical well-being extremely well;p), so hopefully noone knew that I want to sleep in every place I’m in:)

Enough of it. You deserved a short photo relation.

This is what I saw in Frankfurt:

surname with some typos, but still nice:D

And these things I dint…

You know what I mean;) And I hope these photos are from Frankfurt am Main:) Ehhh… It’s been long time of writing. Now bit of the rest. I really really really really really really need this:)

For a long while I had this question stuck in my head: does stroke hurts?

Up to few months after the stroke I thought it doesn’t. To be precise: I remembered that in hospital I was in a big pain. Everything hurt. Badly. But not head! I had a toothache. My head was in pain in the two places I hit it while standing up attempts. My ass hurt. My arms and legs hurt from all the drips.

But then I spoke to my dad and he told me that I felt terrible pain. I kept asking for pain-killers, I was moaning and I was holding my hand on a head. Not necessarily in a place where I had hurt myself. And that was last time in my life when my boyfriend seemed to care about me. My mom says that he was sitting next to me and holding hand on my head. And with it I seemed to be more peaceful.

That was all about my swollen brain. It was so swollen that it nearly didn’t fit into my skull.

Somewhere I red that stroke itself doesn’t hurt. But the pain can be one of the symptoms. How crazy is that? Maybe depending on the kind, whether it is ischemic or hemorrhagic. Sudden pain can be one of the symptoms!

My brain stroke happened between 8 and 9 P.M, away from my hometown and my family which had luck of hosting my brother for Christmas. On the first night I remember calling my parents. Yes, not my mom, but parents. As a well-behaved girl I told the doctor that he had been lying to me by telling me that my parent’s were going to be there soon. Due to my knowledge my parent’s were like 500 km away. Good that he could have difficulties understanding my „speech”.

Doc was right though. Ania, my rescuer and best friend at the same time, immediately called my mother. And my mother, woken up, found my and my brother’s medical records, went to the pub where my dad was having just next beer with my brother, and the drove to me this 500 km all night. From time to time speaking to Ania and to doctor. She had to be the one in control of everything. She had to stay strong for me and for whole family. After my family reached hospital, she was in control. And she gave Ania a lift home, where she washed my blood from walls.

I know that in this first period she cried only once. When she opened my computer and saw my cheerful picture from last holidays, taken just a month back.

i have no idea from which place my mom took all the strengh she had then. From that time I know that my mom is a tough lady. Normally she is not like this, she has many doubts, is a bit lazy, like all of us… But you know in the time of crisis she was a superhero. She still is one. I love her for that and everything else (except for telling me all the time „Kasia, brush your hair!”)

I remember, for example, telling my flatmate about rice on fire. I remember that after being admited to hospital I could just stand up and walk away. I remember feeling pain. It was my stupid tooth. I remember being full of energy and strengh. I also remember being fully awared what was going on.

I don’t remember it well. About rice I could only try to mumble few words which noone could understand. I had left-sided hemiparesis. I wasn’t able to move my left arm or leg. Standing up or even moving a bit on a pillow was impossible. My conciousness was restricted to the word that people kept repeating. „Stroke, stroke, stroke, stroke”.

I was 25 and i had a stroke. I really didn’t know what that means. I didn’t know that that ‚stroke thing’ will change my life. for 180 degrees. I was going to find out about it really soon.